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Review
. 2016 Oct 25:8:577-581.
doi: 10.2147/CLEP.S99470. eCollection 2016.

Danish National Lymphoma Registry

Bente Arboe  1 , Pär Josefsson  2 , Judit Jørgensen  3 , Jacob Haaber  4 , Paw Jensen  5 , Christian Poulsen  6 , Dorthe Rønnov-Jessen  7 , Robert S Pedersen  8 , Per Pedersen  9 , Mikael Frederiksen  10 , Michael Pedersen  1 , Peter de Nully Brown  1
Affiliations
Review

Danish National Lymphoma Registry

Bente Arboe et al. Clin Epidemiol. .

Abstract

Aim of database: The Danish National Lymphoma Registry (LYFO) was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark.

Study population: The LYFO database was established in 1982 as a seminational database including all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000.

Main variables: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis), and three process quality indicators (time from diagnosis until the start of treatment, the presence of relevant diagnostic markers, and inclusion rate in clinical protocols).

Descriptive data: Approximately 23,000 patients were registered in the period 1982-2014 with a median age of 65 years (range: 16-100 years) and a male/female ratio of 1.23:1. Patients can be registered with any of 42 different subtypes according to the World Health Organization classifications.

Conclusion: LYFO is a nationwide database for all lymphoma patients in Denmark and includes detailed information. This information is used for both epidemiological research and clinical follow-up as well as for administrative purposes.

Keywords: clinical database; lymphoma; quality assurance; treatment.

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Conflict of interest statement

BA has received research funding from the Danish Cancer Society. All other authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
The four registration forms and the number registered in the LYFO for each form. Notes: All patients have a primary registration form, whereas only patients receiving treatment have a treatment form, only patients who relapse have a relapse form, and only patients where outpatient follow-up is terminated have a follow-up form. Abbreviation: LYFO, Danish National Lymphoma Registry.
Figure 2
Figure 2
Survival for patients with diffuse large B-cell lymphoma, comparing departments with the poorest outcome (department Y) with better performing departments (department X) in the time periods 2001–2006 and 2007–2014, showing that survival is now equal between departments.
See this image and copyright information in PMC

References

    1. Swerdlow SH, Campo E, Harris NL, et al. WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues. Lyon: IARC Press; 2008.
    1. Cheson BD, Fisher RI, Barrington SF, et al. Alliance, Australasian Leukaemia and Lymphoma Group. Eastern Cooperative Oncology Group. European Mantle Cell Lymphoma Consortium. Italian Lymphoma Foundation. European Organisation for Research. Treatment of Cancer/Dutch Hemato-Oncology Group. Grupo Español de Médula Ósea. German High-Grade Lymphoma Study Group. German Hodgkin’s Study Group. Japanese Lymphorra Study Group. Lymphoma Study Association. NCIC Clinical Trials Group. Nordic Lymphoma Study Group. Southwest Oncology Group. United Kingdom National Cancer Research Institute Recommendations for initial evaluation, staging, and response assessment of Hodgkin and non-Hodgkin lymphoma: the Lugano classification. J Clin Oncol. 2014;32(27):1–10. - PMC - PubMed
    1. Common Terminology Criteria for Adverse Events (CTCAE) [webpage on the Internet] [Accessed February 11, 2016];Publish (4.0 C version) 2010 2009:0–71. Available from: http://ctep.cancer.gov/protocolDevelopment/electronic_applications/docs/....
    1. The International Non-Hodgkin’s Lymphoma Prognostic Factors Project A predictive model for aggressive non-Hodgkin’s lymphoma. N Engl J Med. 1993;329:987–994. - PubMed
    1. Solal-céligny P, Roy P, Colombat P, et al. Follicular lymphoma international prognostic index follicular lymphoma international prognostic index. Blood. 2011;104(5):1258–1265. - PubMed